I have seriously never suffered like I did last night. I went down to 0.25mg of Mirapex and it was a dark haze of nothing but pure pain and suffering. I have no concept of time and have no idea when I finally fell asleep. I chickened-out and took another 0.25 and then some time later, another one. I just couldn’t stand it. I fell out in the garage and scrapped my knees. My face and arms fell into the nasty fan and I have black fan grill marks on my face, hands and arms. I suppose I could find that very amusing, but not. I felt like I was possessed by a demon! I don’t know what to do now...my whole body is sore this morning. I don’t know if I can handle that again. I believe if someone would have offered me heroin I would have taken it. The whole thing is so messed up and a little scary...
Possessed by a Demon...: I have... - Restless Legs Syn...
Possessed by a Demon...
I feel like a failure in this weaning process as I ended up taking 0.75mg. I was warned not to go up on the dosage, but I couldn’t take it...
You tried it. That's not failure. That's jumping off into the deep end. So what, it didn't work YET! OK, now you know, not yet but, later. Day by day and last night wasn't the day to do it. I hope you won't beat yourself up over taking a chance. I admire your bravery.
Thank you!
You are not a failure!!! Please don’t ever think that!!!
I actually did the same thing when I Augmented. If you are forced to increase the dosage because you have consciously decided that you want to live to see the next day, is that failure? I think not.... I did not for once think that what I was doing was failing. Instead, I saw it as surviving!!!
I am very sorry you had a Hellish night last night.
Thanks! What an experience...
Yep, I know. Beyond awful! The true meaning of torture.
Off to the gym now, so talk later.
Gratitude, you have made amazing progress. Consider the dose you were on originally - how far you have come from there. Do not be hard on yourself. You have to come out the other end of this intact. Take it easy. This is most definitely not a failure. Maybe pause here at .75/.5 for a while and regroup.
Ironically, heroin probably would have helped you last night. After discontinuing pramipexole (though my highest dose was never as high as yours), I ended up taking OxyContin for a while in quite a high dose (30mg daily) for 2 or 3 months - can’t remember how long actually but long enough to become completely physically dependent on it. So I know what it’s like to come off OxyContin and it is a horrible drug to discontinue. However, I can honestly say that it was a walk in the park by comparison with discontinuing pramipexole. Do not underestimate what you are going through. Sleep deprivation is a well recognized form of torture and that is without the ghastly impact of the other aspects of rls as well.
Take care of yourself.
Thanks so much for your kindness! I have already decided to go back to 0.5mg tonight, especially since I have to work tomorrow and hope for the best! I’m going to drop down to 0.375 next time I decide to go down on the dosage instead of going all the way down to 0.25. So blazing tricky and strange! I never envisioned myself in such a predicament! Who knew when I started that miracle drug that I would find myself in hell...
Hello I’m Jan and my RLS had stopped until I started withdrawal from Pramipexole or in Australia it’s called Sifrol-1 was on 3 x .025mcgs and had to decrease by only one quarter every two months - now down to 1.5 but have had a couple of stresses lately and RLS has kicked in just as you described so I can’t at present drop any more but today was at work and day of hell- severe pain in legs and back- hard to walk etc and had car accident from stress so really relate to you - im finding half a codeine and 2 x Valium only help- tramadol doesn’t seem to help any more so it seems to be a juggling act- with meds- it is torture that no one who doesn’t have it can understand- stress I can’t take anymore but I deeply feel for you and you are not alone- I found I had to keep up and moving today and tried to focus on just one thing at a time to get through but I made it- I suggest if you need to stay on the present dose do it and only reduce a tiny bit at a time- and be very careful of other meds at this time - good luck , keep posting - we can do it!!! Xxx take care - Jan 🙏🌺💕🌹
Thank you so much! It’s nice to know that I’m not alone in this torture! When the augmentation started, I had no idea what was going on, but figured it out by reading the posts here. So grateful...at least I understand what’s going on with me now because my 2 doctors haven’t a clue! I’m at 0.5mg right now and holding. I will have to call prescribing doctor and request more Mirapex since my new script is only for a month at 0.25mg tablets. Oh well! I am determined, but plan on taking it slower next time I reduce my dose. Thanks again! I appreciate your kindness!
Hi Gratitude I’m finding half a codeine is helping the most now- can you get some of that? It’s a pain killer- I have an understanding GP and I had to stop going to specialists- they nearly killed me! Please please go wherever you need to for relief- it’s worth it- ive read on the forum that others just shave a small amount off the tablets each time- it’s taken me one year to drop 1.5 - you absolutely need good doctor and proper strong med tohelp!!! Take care! I had good night with just half codeine tan- I’m finding less is best xxx Jan
No, I think I’m going to have to go to Atlanta to see a specialist. The doctors around here have no clue! Atlanta is about 3-4 hours away...
From 0.50 down to 0.375 is a big drop, 25%. I doubt you'll manage it well.
I have tried 25% in the past, and it was a train-smash.
On the whole, 5% to 10% reductions seem most advised for many psychoactive drugs.
Perhaps 5% per week or per fortnight would be best. Then stick for a while if it gets too difficult.
Thank you so much for your advice and warnings! I will try to figure out how to do it with those small 0.25mg tabs! I have a pill cutter...
I imagine lots of us have been through this.
We must bear in mind that dopamine agonists are now considered to be truly addictive, in the same way as heroin is addictive. Also, bear in mind that the effects of withdrawal are often many times worse than the original condition prior to medication. That's science. Your dopamine receptors have been down-regulated, and your brain is screaming for a fix.
Withdrawal is awful, and numbers of us just give up because we cannot take it.
When you consider weaning again, be sure that you have all the support you can get, including a strong opioid and an empathetic practitioner who knows what he/she is doing.
Thanks so much! The problem is that neither of my practitioners will prescribe narcotics at all. I’m doomed to go through this with nothing but Gabapentin and Ibuprofen. Not very encouraging! It sounds a little extreme, but I’ve been contemplating going to Atlanta to see a real specialist since the doctors in my area are uninformed and show no sign of interest in learning. They got me where I am today! Atlanta is 3-4 hours away which is doable. We’ll see...
Have you considered Kratom? It's legally available in many parts of the world. It has effects similar to opioid, including some risk of addiction, but lower than Heroin and maybe even oxy. I managed to reduce my Pramipexole from 0.54mg to 0.18 within a month with it. I wouldn't recommend it to most people, but since you are facing hell, it's worth considering.
Thanks for the suggestion! My son tells me not to take it and he’s a pothead...cannabis really helps, but I’m out right now.
If cannabis helps, I would rather take that than kratom. Unfortunately, cannabis is not strong enough for me. Keep doing what works best for you! Good luck!
In June I started taking about 1/2 tsp /night of Kratom. (Much smaller dosage I think than most). It worked like acharm for about 2 weeks, then I had to increase it a bit. After about 2 months it seemed to lose its effectiveness, so rather than risk addiction, I cut off. But for 2 months it was golden.
I love that word...golden...sounds like heaven! For now, cannabis is my golden treatment. It’s just too bad that I can’t seem to find any once I run out and there’s that little catch...it’s illegal in S.C. and not much hope of that changing anytime soon! I appreciate your reply!
Do it! Do it! You cannot do this alone.
Nobody expects other sorts of addicts to cope alone, why us? Ignorance, that is why.
You could write to Doctor Buchfuhrer at the Southern California RLS group. He will reply with advice, and you could take that to your practitioners. I have little doubt he would suggest opioids.
I think we should all be much, much more afraid of DAs than of opioids.
I am more afraid of DA’s than Morphine, or any other narcotic! When I get off them, I’m never going back! It rather ticks me off that they get you addicted with a whopping dose of 2mg/day and then give you little assistance in coming off. They’re so afraid of prescribing narcotics here, especially to the ones that really need it! Yes, I’m seriously thinking of calling the sleep center in Atlanta for assistance. Lord knows I need it!! 😳
Have you considered kratom? Lots of info here on its use for RLS, even one or two that used it successfully during DA withdrawal. It may even be legal in your state...
It’s legal here and I saw it for sale at the counter in a convenience store along with some small pipes. Do you smoke it?
I agree and I've never taken them, there should be fear about DA's. It's often the way that side effects, such as augmentation or addiction become apparent much later.
From what I've read on here I wouldn't touch the DA's.
Sadly I'm also wary of the other types too. I think our brains object to being down regulates whatever the receptors are. It happens with eg antidepressants too ( not related to RLS ) and pain killers especially opiates but I also think others taken eg for headaches which can then spark off 'chronic daily headache' which takes at least 6 weeks off all painkillers to recede.
I HATE brain medicines. I HATE RLS! For the last 3 nights I too feel as if have been possessed by demons, and I take nothing. I wonder if even my tiny amount of codeine once a night has done it to me?
Eventually I put on a Facebook video of a Mozart piano concerto being played & I got 3 hrs sleep. Was that coincidence? I'm going to try again!
I would too! I like the romantic period in classical piano and my favorite is Liszt. He was a genius! Try listening to his “Liebestraum” and imagine that it was composed in 1850! I’m wishing you a symptom-free evening and night!
GratitudeFirst
I have no idea of what your weaning regiment has been but it sounds like you may have cut to too low a dose too quickly. I've been taking an extremely low dose of 0.0625 mg pramipexole for 18 months for PLMD and cannot relate to your journey. However, I have recently spent over 3 years weaning off of high dose benzodiazepines and the process would be very similar even though the drugs are in totally different classes. It took over 2 years to wean down for 4 mg of Clonazepam. 4 mg doesn't sound very much, but as with pramipexole, clonazepam is a very powerful drug even in very low doses.
The main point I'd like to convey, is that even if it takes many months or even years as in the case of this benzo, you can do it successfully. Try to get back to where you were at your lowest dose and then begin tapering in smaller amounts over much longer time frames. I'm sure that you can do it. Good luck.
Thank you...that’s my plan! I went back to 0.5mg last night and only had symptoms about 20 minutes after taking the Mirapex and I’d say about an hour later, they subsided and I went to bed. I only slept 2 1/2 hours, but I have been symptom-free. That’s a very good night!
My heart goes out to you. I know it was a terrible night. I know that when I added gabapentin those nights lessened. I did have to play around with doeses before I found my any peace. I hope you aren't too banged up.
It was a nightmare, but all was well last night! What a relief! I don’t believe I could’ve done it two nights in a row! Thanks for your kind words!
I'm glad to hear it was better last night!!
Anytime. We are all in the same boat and totally understand each other.
Just 30 minutes ago thinking "damn, I have a Demon that enjoys sleep torture ". I then I got up, checked my email and saw your post!! What coincidence! What's the name of your demon? I, for fun, envision it like one from the movie "Gremlins". 
I have been weaning off 1MG and now am at .50MG - that was hard! "Like coming off Cocaine", they say. I first tried straight away dropping to .50 but it was too hard, so I stepped down to .75 then later to .50. I see no increase in my symptoms (of my PLMD) at 50% of my original dose. I am trying to drop to .25, (only doing it on days that I am less agitated) but at 25% of my previous dose, I am seeing an increase in my spasms.
I was also on .50 MG Trazadone to help me relax mentally. It got to be nightly. That was almost as tough to kick. Now, I just use it on nights when I need to calm down as my wife is against Cannabis. The fact is, that Cannabis is effective and lighter, and does not leave with with any brain fog in the morning like Trazadone. But to my wife, even though it will be legal later this month in Canada, "Cannabis is bad" and prescription drugs are "ok" (argh)...So I have to sneak it. I have vaporizer which emits very little unhealthy smoke. Ingesting decarbolyzed Cannabis is even better (a "body buzz" is best for our syndrome).
My hope is to cut out the Pramipexole completely as it has caused some problematic augmentations of desires, especially in the "sexual drive department".
Yesterday had blood taken to analyze my mineral and iron content. Hopefully, I find causation in something lacking there ...in weak electrolytes or brain anemia... can than be simply remedied by supplements (correct neurotransmitter problem due to low electrolytes).
Also I MUST make sure I hit the low hanging fruit and:
1. Cut out the caffeine
2. Cut out the vigorous exercise before bed
3. Cut out eating late
If anyone has any good advice to add, please feel free. 
Ron
Hi rfcplms, hope you don’t mind me jumping in. I have seen others refer to their rls as ‘the beast’. I definitely see mine as having a demonic personality and very gremlin like.
Your journey sounds sadly familiar and I suspect you are in for a rough time if you reduce that pramipexole further. It is a shame your wife feels as she does about cannabis. It is a useful tool in the armory for some of us. Perhaps once it becomes legal she will find her attitude gradually changes. However, if you go much lower with your pramipexole dose you may need a temporary opioid to help with the symptoms.
Ironically, I find a cup of coffee when I am in the throes of an attack can be helpful for some reason. I think there is a note in one of the medical textbooks to the effect that there is no established link (not even anecdotal) between rls and coffee so you may be able to leave that particular fruit on the tree for a while. I do find that going to bed a bit hungry is better for the legs than being full so late night dining might be better avoided.
Have you had your serum ferritin checked? US experts suggest it should be over 100 for rls sufferers. Some people find their symptoms improve a lot when they increase their iron levels.
thank you for your comment, I appreciate it very much.
my iron level was on my blood test to be analyzed. I will ask my doctor if ferritin and iron are the same things. if ferritin wasn't on the list I will ask him to test it. I will keep in mind the 100 level that you mentioned. As for the information about caffeine, that is interesting, I will experiment with that.
The "demon" is quite effective. Beyond fixing the source problem of the plmd is the fact that, by habit of years of constant disruption, my body doesn't even remember how to slip into sleep naturally.
Forgot to mention one more basic action I am doing: reduced carbohydrate diet
Lots of people find reduced carb diet helpful, particularly reducing refined sugars. Recently some on here have been swearing by a vegan diet. Other enthusiastic recommendations I have seen are for the fodmap diet and the low oxalyc diet (not sure about spelling). I’m not sure how much these relate to pure plmd however - they may be more for rls.
I think that plmd and rls have the same triggers. So solutions for one should be good for the other.
Not what you're looking for?
Moderation team
